Tuesday, August 9, 2011

August 2011

This past week we went to Ocean City, MD for a week which was nice. The weather was good for the sun worshipers! Hot! It's always good to be surrounded with my kids and family. My wife, Emy did a good job caring for me without the help from our caregivers. I will be forever grateful for her love and support. The best moments in my life are when I'm surrounded by my family. Never take those you love for granted. Cherish every moment with them because you never know what the next day has in store.

Lately I’ve been feeling sad. I’m not sure I know why. Maybe it has to do with my progression and the reality of the effects are sinking in. But I think the biggest challenge for me right now, has to do with lacking the ability to engage in meaningful conversation with other people. It gives me the feeling of being alienated from the lives of my friends and the people I used to interact with. Even when I get out and around people, I still feel left out. There is no time to type out what I want to say to be involved in a conversation when I have something I would like to say. There are times I would love make a comment while driving along but I have to sit there in silence. I can't use my iPad while driving because my hands aren't very steady. I can communicate with my iPad with an app, but it's just not same. It speaks with a robotic sounding voice which doesn't really relay my true expressions. This has by far, been the most difficult aspect of dealing with ALS to date. I can't even begin to explain the isolation and loneliness it causes me to have.

Your prayers and support are greatly appreciated!